our best advocate died; please say thanks

Ted Van Zelst has died. Most patients have little or no idea of how incredibly important he is in the history of CFS. I got to know him well when working with him in the early years of CFS advocacy. I got CFS in 1970, so my perspective is unusually broad, but I hate to think of how bad things would be now if it wasn't for all of Ted and his wife Louann's excellent efforts on behalf of all of us.

Hillary Johnson has written in memoriam to him on her blog at:

http://oslersweb.com/blog.htm

Please read it. I left a comment there, and I'd like to ask everybody to leave condolences and comments there and also here. I will forward them to Louann Van Zelst.

Thank you so much for posting this. I had never hear of Ted and Louann's advocacy for us. This is an amazing story. Hillary is such a great journalist. We're so lucky to have her as well.

I found this survey they did in the '80s very interesting:

"The demographics of this survey were a fascinating reflection of what was occurring during those early years:

*Half the respondents had been sick for less than five years.
* Women outnumbered men by three to one.
*Health care workers and teachers were disproportionately victims.
*Forty percent were completely disabled; although nearly 100 percent of those reported they had been denied Social Security disability benefits.
*Nearly half knew other people with the disease.
*Slightly more than one-fifth reported that other members of their family had the same illness."